Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Monday, June 25, 2018

Wednesday Conference on June 20th, 2018

First off, I know many of you have been wondering what was said in regards to Callie's MRI results, I have lots of you messaging me, texts and we are so thankful so many are thinking and praying for her. There are some circumstances that are just a lot to take in and you need time to process, this would be one of those times. Not to mention, it is a lot to explain and can be somewhat confusing. So, I will do my best to explain :-) So, since my last update, Callie had her MRI and it was an interesting experience ;-) It was her 1st MRI so the loud noises, etc freaked her out in the beginning but she managed to make it through. Callie's MRI raised numerous questions, so they team decided they needed to get the whole team together and conference on her. Multiple cardiologists, her cath doctor and surgeon were present during this meeting.

Some of you may know and some may not, but Callie has a very unique and complicated set of heart defects. There are very few with all the combinations of defects that Callie has, if any at all. Years ago, we were told Callie would never have her bidirectional Glenn, then guess what, a year later -  she was able to have that surgery! Then, we were told, she may not be a candidate for the Fontan surgery and if she did make it there, she would be VERY high risk. Guess what, she rec'd her fenestrated Fontan Jan. 2016. God has blessed us with an amazing kid and we praise him for her feisty self. And this brings me to the MRI & cath results.....

Currently, Callie has a fenestrated Fontan - simply meaning if you think of a pipe as her Fontan running up and down, she has whole in the side of it, some call it a pop off - basically meaning she can still mix her blue and red blood as her body sees fit. When she had her Fontan back in Jan. 2016 this was needed or her Fontan would have failed. Now, her body is using that fenestration too much, so the blood goes up the Fontan and instead of continuing up to feed into her pulmonary arteries, it is simply using the fenestration as an escape route, essentially using the path of least resistance. So, instead of her lungs getting the blue blood it needs to pick up oxygen, her lungs are mainly getting red oxygenated blood - so once it reaches the lungs, it cannot pick up anymore oxygen - this is one of the reasons why are oxygen is lower than what it should be. The blue blood just keeps getting recirculated into the body. They saw some narrowing in certain places but nothing that should keep the blood from where it should be going. In Addition, she has developed collateral vessels to her left lung and this is a huge problem , so on the left side she is getting a lot of her blood flow through these vessels instead of using her Fontan circuit. Long term, this is very bad. They did coil off (get rid of) 6 collaterals in the cath lab but we were told she has a lot left. They coiled off the biggest ones. Which hopefully by coiling these off, will help the blood flow go where it is suppose to.

They team discussed surgical options for her and at the moment her surgeon feels there is nothing he can improve her situation. He may re-evaluated at a later date if needed. Secondly, they talked if there was a way to make her fenestration smaller so she would use it less, at the moment not really. But, her cath doctor will think more about possibly closing her current one and then making a new smaller hole, so she can still mix her blue and red blood as her body needs to. Thirdly, they also discussed heart transplant.

The current plan is to start Callie on a vasodilator medication, the hope is this medication will help her rely less on collaterals and use the Fenestration less and utilize her Fontan circuit. Please pray hard this medication works, pray hard. We are still waiting on insurance to approve the medication, please pray it comes very soon - so, she can start it. 6 months from the date she starts the medication, we have to return to California for another heart cath and maybe MRI, to see how the medication is working. Which is looking like that will be January. While we are there in January, they also want her to be evaluated for transplant, to see if she is even a heart transplant candidate. Not saying, that she is to that point yet because she is not. Everyone actually is amazed at how great she looks and is doing despite how she looks on the inside. Big praise there! This way they will know if she is not a transplant candidate, they have to do everything in their power to optimize her as she is, whether that means more surgery or whatever. If it comes down to she needs a transplant, I pray she is a candidate but I also hope that is something that can be put off for a very, very, long time!!!!

My daily prayer for the next 6 mths, is that the Lord will do amazing and unexplainable things in that little body of hers, that this medication will be hugely beneficial to her and that the changes will be seen. And that the talk of transplant will be put on the back burner. I know we serve a great God and that is 100% seen through Callie's life.

In 6 months when we return to California, this will be at least a 2-3 week trip due to all the testing and extensive appointments that will need to be done. By the time we financially get back on our feet from this trip, we will be preparing for our next trip. Please pray the Lord provides for all that is needed financially during this time. I am leaving the GoFundMe website up and activate to help prepare for the next trip, the link is on the right hand set of the page, just click on Callie's Heart Fund if you feel led to give. I also will post a paypal link as I have many ask about sending funds via paypal. 

I know I say it a lot, but it is 100% heartfelt - We are forever grateful to the continue support of each and everyone of you over the years. I hope most of what I said, makes sense ;-)

Please keep our sweet girl and our family in your prayers over the next 6 months!

Friday, June 8, 2018

Staying in Cali for a little longer....

Due to some results of Callie's heart Cath, her cardiologist at home and her team in California felt it best if she remained here for additional testing. To give a little detail of her heart cath results , her narrowing in her aorta required some ballooning and more than likely will need to be surgical address in the future. Her fenestration was tested to see if it could be closed but this increased her fontan pressure to high, therefore they did not close the fenestration.

Her oxygen saturation is lower than what it should be even with having a fenestration. Therefore, she will be meeting with a cardiologist here who is a Pulmonary vascular specialist. He has ordered a cardiac MRI which will be performed on Monday and we will meet with him on Tuesday. She has already completed another test that he ordered also, which watches what her oxygen does after walking consistently for about 5 min. The team here in California also wanted her to meet with a pulmonologist and we are hopefully meeting them also on Tuesday.

All this is to determine what they can do to get her oxygen up to where it should be for her current fenestrated fontan anatomy. Something to keep mind, Callie was a high risk fontan to begin with and we hope staying and seeing these specialists will keep us ahead of any majors problems in the future.

Please pray for Callie as she has to remain still for 1 hour for this MRI and everyone's goal is to not to have to sedate her during this procedure.

Thank you for the continue prayers and support during this time. We are all ready to be home but we know this is where Callie needs to be at the current moment. We are making the best out of trip, doing fun things with her when we can. Very thankful for the Ronald McDonald House, she is having a blast playing in the playroom every afternoon and has made a few friends😊 We are thankful she is where she needs to be and we have such a great team of doctors standing behind her, they have all been working so diligently to get everything schedule as quick as possible, so we can hopefully get home soon.

As soon as we know more, I will update.

Monday, June 4, 2018

Pre-Op Day for Heart Cath

Pre-op went well, everyone was very pleased with how Callie is doing. They all commented on how great she looks😊 So happy!! Her heart cath is scheduled for 8am tomorrow and prayers that we do not get bumped. Prayers for an easy cath with no intervention needed and she can be discharged the same day to rest at the Ronald McDonald House.

Callie is in great spirits! Here are some pics from today.